Has anyone heard yet about TN being hereditary? My daughter called me last night and told me that her left jaw from the middle to her ear has been having shooting pain. I’m praying that it isn’t
I have not heard that it is but my mother suffered with it for 13 years. I knew she had pain but had no idea it was so bad or what was the cause. She was never one to complain much. She is no longer around for me to ask her questions now or get her help. My sister was around her more and she has been a big help with comparing notes. She says it sounds just like what she suffered. I know she even had teeth pulled thinking that was the problem. My daughter works in dental and she said they have to be careful of that nerve not to damage it. Yet my dentist acted like he knew nothing and sent me to another dentist who wanted to send me to a neurologist. But my dr. (Kaiser HMO) would not refer me to one. She said she knew what the Problem is and did not think much of the medication due to side affects and surgery as a last result.
I've recently saw that as well and I am planning to get tested. I hope she doesn't have TN but it couldn't hurt to get check so you can start treatment sooner than later if it is.
Thanks Margie, I’ve had it since 2007 and didn’t find out what it was until a year and a half later in 2009! It’s been so long ago, I’m trying to remember how it started out. I just told her to keep an eye on it. If that’s what it is, at least she will have the benefit of my experience with the pain.
Margie Dunn said:
I have not heard that it is but my mother suffered with it for 13 years. I knew she had pain but had no idea it was so bad or what was the cause. She was never one to complain much. She is no longer around for me to ask her questions now or get her help. My sister was around her more and she has been a big help with comparing notes. She says it sounds just like what she suffered. I know she even had teeth pulled thinking that was the problem. My daughter works in dental and she said they have to be careful of that nerve not to damage it. Yet my dentist acted like he knew nothing and sent me to another dentist who wanted to send me to a neurologist. But my dr. (Kaiser HMO) would not refer me to one. She said she knew what the Problem is and did not think much of the medication due to side affects and surgery as a last result.
You know Taylor, I’m not sure the dr would put her on anything unless they could give a firm diagnosis. I wish they would. But, then again I don’t want it to become ineffective to soon and have to be on as much medication as I am on.
Taylor said:
I’ve recently saw that as well and I am planning to get tested. I hope she doesn’t have TN but it couldn’t hurt to get check so you can start treatment sooner than later if it is.
Julie,
It can be hereditary and while it is rare, I have talked with lots of members that have multiple family members with TN. I am the fourth woman in my family with it. I have read that with familial TN it is more common for it to bilateral and that it tends to start at a younger age with each new generation.
My mom got it in her early 30's and I first had it at 29 although looking back I had lots of little symptoms into my teens.
There are lots of studies being done right now into the genetics of TN and those of us with it in our families are of particular interest. I have participated in two studies now. The last study my entire family participated in. We need to find a cure for this beast.
Jane
Without wanting to sound too controversial or depressing, there won't be a cure found in the next ten years let alone fifty years. I find it a painful observation, to date who can name a cure for any disease, sure they can hide symptoms, they the medical profession can't find a cure for prevalent heart disease, let alone a disease that affects so few that it doesn't warrant the $.
Drugs and surgery, as for all 'disease', not a nice medical model. The cure for the 'beast', in the majority of instances is available. sure it won't be researched, there is no financial incentive, have a neck massage eat a bit more broccoli, compared to a multi thousand dollar surgical intervention, which is why the majority of neuros know better but still deny a cervical/ neck cause. Their pain clinic isn't going to like the to refer for something that costs minimal dollars, compared to something that is a porche payment. Bear in mind I don't believe everyone has a neck cause, but it is ignored, and despite research evidence it is ignored. Visit neuro, I have neck pain, is it connected, "no", has your neuro even examined your neck? Does he believe it can cause TN? he has already moved on to what he does.
Genetics for TN, sure maybe, unlikely, but are we going to ignore the trigger, the vast majority aren't born with it.
These folk who concentrate on such, and as a therapist, could be part to blame, but there is simply no money in the alternative to meds and surgery from a research point of view. On that point because TN is so rare alternative will be ignored, as will any progress, if any in genetics. Pain clinics make too much money out of the condition. Genetics was proposed years ago, advancements to date zip, from a clinical point. No money, no money from a clinical end, compared to the current. It won't happen.
Slightly off topic but look at the history of modern medicine- western medicine, and money dictates, or actually bought illness and indeed mortality.
Thanks moth. That really is utterly depressing. Being that I am the fourth in my family with this I am at a loss with why. If there were a surgery or drug that would fix it I would be more than happy with that. Instead I am 39 and am in bed at 8 PM on a Saturday night just breathing because my head hurts so much.
Hi Jane,
I’m so sorry you are suffering so badly! I’m on 3 different medication right now that work sometimes and not others. Are you on any meds for yours? I hate to think about what they are doing to the rest of my body!!! But the pain is more than I can bare without them!!! I have had this for quite a while and I’m really hoping my daughter who just turned 34 isn’t in the beginnings of it!
Julie
Hi again Julie,
Oh it is just depressing knowing there is no end to this and Moth caught me on a bad night. I have had it three straight years this time around and it really gets to me when a flare lasts more then a week at a time. I try to be optimistic and am most of the time but it is hard to stay strong all of the time.
I am on Nortriptyline but just a low dose right now. I am at a bit of a medication stand still and just dealing with the pain instead. The side effects of these medications are just not nice. I will eventually try something else because the pain does get to be exhausting.
I really hope that your daughter doesn't get it. I was 29 when this started for me. It is my worst fear that my daughter will get it and being that I am the fourth in my family there is a definite chance of that. A lot of people don't realize that it can be genetic. We are just the rarest of the rare and so little is known about the pain we endure.
What meds have helped you? Nortriptyline hasn't been that great. I was on Amitriptyline before that and it did help but the side effects forced me to switch.
I hope you are having a low pain day.
Jane
Sorry Jane,
Believe it or not I'm known for my 'bedside manner', in a positive sense, these days however, the eggs are probably off before they are of use. On a serious point, I often miss the personal or even the point, when replying on the forum, that there are real people suffering, when they are not in my physical circle. As such I am short of the empathy, though not short of thinking hand holding would make a difference, I am aware of the short comings on this note in my posts. I will try harder on the sentiment/ sympathy part, which is the reason I'm here in the first place.
Kind regards and wishing you and any other TNer the best
No worries Moth. I am not easily offended. It is just truly depressing at times. Optimism goes a long way in helping day to day to maintain a positive mental state. The truth is hard to hear I guess. Maybe I do hope against hope that treatment will improve. But is that too much to ask for? Plenty of others conditions have effective medication and surgical options and our voices are getting louder and louder. I value your opinions on this forum and welcome all points of view always! It was just a bad night last night which I am not ashamed to admit. Things are not all roses with this beast that’s for sure.
Jane,
Right now I take Lamotrigine 200mg, Duloxetine 60mg, 2 Zonisamide 100mg all twice a day. I’m still having break through the pain. I was taking Gabapentin with to many side effects, so now I just have double vision and balance problems! Have you taken any of these or had any of these side effects?
Julie
Jane how much nortrip do you take? I just went from 50 to 75
I am just on 30. It wasn’t working very well. I was up to 75 at one point. Amitriptyline worked better for me but the side effects weren’t great. I need a new medication. I’m just dealing with it for now
Julie, my mother contracted TN at age 51. I had forgotten all about it. When I was 51 on a motorcycle trip across Mexico, I had my first symptoms. It feels pretty hereriditary to me.
my mother got it at 63 and i got it at 68
Oh no! Not what I want to hear. I pray that my daughter never goes through this horrible pain! Mine started about 41-42 years old. My daughter will be 36 this year. I don’t think I’ll pass this news to her.
good morning,
According to the literature, TN is not hereditary however, my grandmother had it, my mother had it and now i suffer from it. I find it very hard to believe this might not have a hereditary component to it. Both my mother and i had the ablation which was very successful. Yes, there is numbness to that side of your face after the procedure but the pain is gone. The numbness you eventually get used to. I am 6 years out from right sided TN. Unfortunately, although very rare, I now suffer with TN on my left side.
Hi again,
The information that says it isn't hereditary is outdated. There is research being done into the genetics of TN and they are particularly interested in familial TN. While it is very rare, only 1% to 2% of all TN cases are familial, we are out there.
Do some research. Look up "familial Trigeminal Neuralgia" on google.
Jane